Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group a question

Just had a mini argument with spouse....

He asked if I wanted to go get some lunch and I said I had to go in to work early to talk with the FMLA person at the hospital. He asked 'why?'. I need more information because my rheumy refused to fill out the papers....said that the risk of infection on mtx wasn't up to the level of FMLA.

DH went off on a rant about how I was always trying to find new treatments and undergo grave risks (the epidural injection last week) and how that was a psychological issue. I should just take more painkillers. I don't see it that way.

As a rebuttal I mentioned that I wasn't going to do the same as he did with his PSA elevation....not seeing why it is elevated because he is afraid of the biopsy causing incontinence. It could be something benign, but he isn't going to do anything and just ignore the whole thing. I'd rather be proactive and try to rid myself of the NEED for more powerful painkillers. Grrrr.

Does anyone have a person like this in their life? I don't think anything I've done is really 'out there'...it's all mainstream medicine for the problems I have. It's a serious disease...not like most issues I've had in my life.

Just wondering why I'm not just satisfied to get painkillers.

I feel for you My ex was like this, never had any ill health in his life, and couldn't understand that I was in pain. He thought it was me being lazy, and making excuses for not doing things. I really wished he could experience what I was going through, to understand. As I said, he is now my EX husband!

I can't offer you any solutions to this (apart from divorce the b*stard!!!! (only joking!!!), just that you are not the only one who's partner/husband doesn't understand what you are going through. When you suffer from something like this, you will try anything to relieve the pain, and try to live a normal life.

I am lucky, my new partner (now fiancee!) is very understanding and supportive.

I really hope you two can work this out. Pain is not a psychological issue, it is a pain issue! Does he come with you to your doctors appointments? Maybe that would help him understand?

All the best,
Emma.

Thanks....he's usually pretty supportive and loves me a lot. No he hasn't come to doctor appts. May be time for that.

May be get him to come onto KickAS, and see what you are dealing with? I hope you didn't take my comments about my Ex Husband to heart! I'm sure your husband loves you to bits, but I guess he is having problems understanding what you are going through, and is also probably a bit scared about the future? It's not easy to accept that your partner is in constant pain, and that the prognosis is not good In my experience men like to be able to fix problems, so may be he is feeling out of his depth with this? Maybe suggest ways he can help you, then at least he can feel he is doing something.

All the best,
Emma.

So many partners/spouses see these things as black and white, cut and dried, easy peasy answers. They aren't.

Sadly, I don't have an answer on this one. It's just not that easy. They don't understand and often, because they can't fix it, they want us to do the most expedient thing and shut up about it. Yet, this is, in its own, rather back-handed way, him showing his concern. He wants the woman he loves to feel better.

He also wants the woman he loves to come back to him and right now, she's married to pain and treatments and doctors' appointments. I think you know what I'm trying to say there. I don't see how an epidural is a grave risk, but I'm not living your case. Still, this indicates that he's frightened for you. At least it does for me.

You know, we talk about people finding the magic bullet treatment that will make it all stop. I think that's what he's looking for, too.

Warm Hugs,

glad to see in your second post here that you say he's usually supportive and kind. so sounds like he's maybe a bit frustrated as well. my husband is usually really good, but he of course gets frustrated, its only natural.

its good to have a sounding board you can trust, sometimes its nice having someone who can see it with a different perspective than we can, but also someone who respects the final decisions that we make. that's a good balance i think, giving us their opinions, but leaving the final decisions up to us.

find its best to discuss these things, once the emotions have past, then have an honest but rational and calm discussion. no pointing fingers or accusing, but sharing how we are feeling with one another, and the other listening to that. no "you shoulds", no advice during this time.

Oh does this sound familiar. Yes, I have one similar.

I wish I had a dime for every time my husband asked are you getting sick AGAIN? I am forever trying to carry on as normal as I can, which isn't easy. I also have another auto immune disease which compounds things! (Sarcoidosis) I have trouble breathing and have tumors that invade different organs. He gets brought to his senses when he thinks he's going to loose me. (When the tumors test malignant, then we have to wait for the biopsy results)

It is very difficult when they are used to being well all the time! Heaven forbid they get a cold or a sore muscle. If that happens I hear about it over and over! I NEVER complain!!!! So when he bothers me by asking over and over getting upset if I don't feel well it's rather hard NOT to get mad! Especially when we are trying to just make it through the day!

Hang in there! Good luck! God Bless.
Trae!

I don't get it..why are most guys such freakin babies???

I mean it's all the hard core crap like you sick again?, WHAT, you don't feel like going..I would go if my leg was cut off...pfttt!

BUT..when something happens to them or they get sick OMG you would think the world has to come to an end.

I don't know guys maybe some of you can share why because that just doesn't work at my house...

Lisa

Sorry you are having to deal with this. Its the occasional spousal arguments/lack of support that hurt me the worst.

AS can grind on and on and I keep a stiff upper lip but when hubby had to ask if I was "really that sick, or choosing to lay in bed all day" this past winter flare, I blew up. I crumbled inside and wanted to melt out of existence. He is usually supportive, I guess its normal to have a "discussion" like this sometimes. I want to weep just thinking about it, still.

It's like we try to be so tough living with this disease because its an IT, but when a warm body deals out pain to us, it is just too much. I hope it blows over soon. I try really hard to explain everything to my hubby. So maybe you could explain the whole conundrum with pain killers and AS. For me I build up a tolerance to them quickly, every doc is worried I might turn into a junkie, and they cause lovely constipation. Bottom line for me is: Pain killers aren't a long term option, which totally sucks by the way. Until I had AS, I foolishly assumed that in the year 2010 we'd have advanced medically to the point of being able to keep chronically ill patients comfortable. I am not comfortable. lol

Good luck,
Donette

This could be a factor....not being able to fix it. I'll keep that in mind. Guys like to fix things....cars, houses, broken dishwashers, wives....

Thanks for the insight.